Pistol

I had my catecholamines taken early on ( after just 2 years ). They took them after reclined in a chair for 30 minutes and then I had to walk for 30 minutes around the hospital. Then they took it again. I was elevated reclined ( above 600 ) and walking ( almost 900 ). But at that time I was not symptomatic - who knows how high it would have been when I was having symptoms!!!! My specialist says some people go up to 2000!!!!!!

@green - yes, seasonal changes always cause my symptoms to worsen. In my case spring is the worst. In the winter I do OK as long as I am inside but when I go outside for just a short time that is when I feel it. It takes a while to come back to normal. And I also feel sluggish during those times. It has been mentioned that barometric pressure has a direct impact on our cardiovascular system, I also notice sudden changes right before a thunderstorm hits.

@DAB19 - the stronger heart beat after eating is most likely due to the increased circulation sent to digestive tract. I also experience the strong beats rather than fast beats since on medication and - although concerning - they are harmless. I too can see my pulse in my abdomen when lying down and had this all of my life. @Samy - this was very much noticeable when I was skinny and the docs also told me it was only from being skinny. So DAB19 - I would not be too worried about it , especially since you had a CT scan recently. It would have shown any abnormality that is serious.

Hi @Faustus - welcome to the forum. Yes - I too get severe chest pains, unfortunately this is not uncommon for POTS. It has to do with tachycardia and circulation changes to the heart. I used to think that I have a heart attack too, especially since the pain radiated up my neck and down my arm. Most often I also have high BP with the CP. Beta blockers and calcium channel blockers have helped. But - to make sure that this is just POTS related CP you should see a cardiologist. If EKG and cardiac enzymes are normal you should have a stress test to be sure. I had several stress tests over the years and finally had a heart cath in January that showed no blockages but angina. So - now when I get CP I can be sure that it is not a heart attack. I have also found that IV fluids get rid of the CP in my case, and when my symptoms are controlled I do not have the pain. So - please do not dismiss the co until you are thoroughly checked by your cardiologist. Best wishes!

I am confused - I was always told to elevate the TOP of my bed for GERD symptoms and the BOTTOM of my bed for POTS related cerebral hypoperfusion … so I just did not ever elevate anything. You guys are saying you elevate the TOP of the bed for POTS?

@dogmom - welcome to the forum and I am sorry you are having all of these problems! I too have NCS and POTS and also used to faint frequently. I lost my job and am now disabled. What I recognize in your post is that your symptoms are very similar to mine. Regarding the flare: as you may know OI and fatigue will get worse with bedrest, so despite how bad it makes you feel you must make yourself sit up and even stand up frequently, even if it feels terrible. Also leg exercises are essential. And when I get as bad as you I ALWAYS go for IV fluids. If your doc has not yet tried them on you I highly recommend you go to a clinic or ED to have IV fluids delivered, ! l over 4 hours at least. This helps for both HR, BP and fatigue. And once the VS are controlled you can start getting up and that will in turn improve your orthostatic symptoms and fatigue. If your benefits run put soon I would see your PCP or cardiologist ASAP and have them review your symptoms, that way they can give you treatment recommendations and you may be able to get 3 month supply of meds before the insurance ends. That is what my PCP did for me when I first had to stop working and lost my benefits. --- Best of luck!

@Scout - that is sure difficult to deal with. I also seek treatment proactively due to severe seizures from untreated flares, so the ER used to see me frequently and some staff treated me like an attention seeker. Thank god I have a great PCP who understands my symptoms and will fight for me when needed. --- I have a husband and he is always home and drives me to all my appointments, does the shopping and takes over transporting my teenage daughter. However - if they go away for several days I am also home alone and we live 1 hour away from any hospital. So I have a medical alert system for those cases. They know all of my medical info, numbers to close by neighbors and can alert 911 when needed. It is a a button I wear and can push for help in case of an emergency or if I just need someone to come over they will notify my neighbors. And if I am unable to answer they call 911. This is a great relief for me and my family knowing that in case of an emergency I do not have to get to the phone. we all know how difficult it is to explain our situation when we are sick!!! - I also wear a ID bracelet that says : POTS, syncope, seizures, give IV fluids on the front and my PCP's name and number on the back. It also alerts first responders to check my wallet for detailed medical info and medication list. This might be something that would work for you? It truly helps with the anxiety when I am home alone. -- Stay strong!

When I get tachycardia I get also chest pain as well as nervousness. Palpitations ( in my case PVC's and PAC's ) cause a definite "jumping" sensation in my chest, not a pain. Cardiac awareness is a symptom of POTS - because we have so many weird symptoms that are caused by our heart rate / BP we are very sensitive to it. My specialist always told me that the palpitations are a sign of the ANS becoming hyper-sensitive.

@jklass44 - it depends in my case. If the seizure is a new thing for you it can mean that your dysautonomia is getting worse and you need to have your meds reviewed. In my case the seizures are "normal" finding with a flare and yes - I do ride it out (or get fluids and be done with the flare). But any new symptom alerts my docs to revisit my case and my treatments to fnd not only a potential cause for the flare but also if a change in meds may be indicated. I have found that this has shown a lot of benefit in determining what meds are essential and what meds may need to be tweaked a bit.

@Amy_ - a root canal is a painful and scary procedure, therefore it could theoretically cause a flare due to the release of norepinephrine. Also any infection can cause POTS to act up.

@blizzard2014 - 120/100 at rest is still pretty high to go untreated. You might want to check with your doc and he might want you to go back on some of your meds.

I am sorry @jklass44 - but I do know what you are going through. I too take seizures when I get hypertensive from POTS and I also - of course!!!! - get anxious as soon as I feel a flare coming on. And yes - if it gets out of hand I have to go to ER and the same story as yours: it's either I am told I have a panic attack or I have even been told that I am faking it! There were times they even refused to give me IV fluids - despite the fact that I just had a seizure with soaring HR and BP in the ER!!! For the last several years my frustrated PCP just admitted me to the hospital for Observation and after 24 hours of fluids I walk out brand new. Until this summer when one hospitalist refused to admit me for fluids because "I can drink"!!!!! He said that IV fluids are just a placebo effect and POTS patients have to learn to hydrate better to avoid flares. ( Of course this hospitalist was young and felt he knew all there is to know - yet was not even educated on hyperadrenergic POTS!! Had no clue!!! ). So now I have a port, get home infusions weekly and prn for flares and have not only avoided hospitalizations or ER visits since then but also have drastic improvement in my day-to-day abilities. --- My cardiologist tells me that it is still very difficult to get MD's to accept POTS. When he goes to conferences and the subject of POTS comes up they all tune out, start talking or leave the room - they just don't want to hear about it. In my opinion that is because the concept of dysautonomia and it's cardio-vascular effects require them to throw out a lot of their theories and change their approach to medicine. THAT of course is too much for them to wrap their head around - aren't they the almighty and all-knowing cardiologists? Is it not the doing of the patient when he/she does not respond to their treatment recommendations? Fluids, salt, compression, betablockers … if that is not enough then the patient is either not compliant or ii is anxiety. --- As you see - we are in the same boat. Do you have a specialist that can review your meds? Have you ever tried IV fluids for your symptoms? It brings my BP and HR down immediately and chest pain, cold hands and feet etc disappear. Also - you could ask your specialist to write a letter which you can carry with you that explains your condition and treatment recommendations. That way you have something to give to the ER when you are too ill to fight with them. Best of luck - stay strong!

Great news, @Andy T! I also am experiencing only positive results from my IV fluids. The energy I have and the good numbers far outweigh the risks (I have a port). Wish more docs would listen to their patients and observe the actual benefits from this therapy!!!!

I have both - low AND high BP. I can tell immediately when my BP goes above 130/80-ish. And I feel wonderful and my BP is 90/50. All of my life I have been hypotensive and feeling GREAT with it. Only when I developed POTS did my BP go up and I feel awful when it does. So - we can totally be well with low BP but it is when our bodies are not accustomed to it tht it presents a problem. Well - wait - also when it drops TOO FAST that we become symptomatic. What do you think about this theory?

@gertie - I used to faint often and needed to learn to recognize the signs leading up to syncope before I was able to stop - in some cases - the actual fall. Yes- standing to do dishes will absolutely do it to you!!! And also Yes - I have a headache afterwards, more of an ache in my head and feeling tired, as well as slurring my words for a few minutes. …. If this is starting to happen more often to you and it is unusual for your I would see a specialist. You said you have had Dysautonomia for a while - I would revisit your doc that treats your POTS. Every few years or so ( as soon as we think it's over ) POTS tends to rear it's ugly head! --- I have found that as we age our bodies change and so do the dysautonomia symptoms. No difference if we are 30-40- or 50 : there will be symptoms that flare. … I am sorry you are having problems - Be well!

In the medical field they prefer the use of finger sensors for PO2 readings. They will use the ear if there is not adequate circulation in the fingers but it is not accurate. It is not uncommon to have decreased PO@ readings when raising your arms above your head - that is not usually done or recommended while attempting to get an accurate PO2 reading. It is completely normal to loose some degree of circulation when extending your arms above you heart since it alters the rate of how efficiently your veins can pump the blood upwards. Therefore any readings taken by any probes in that position will not reflect true readings.

I would increase the dosage before I would see another doc. Often meds are effective but we have to slowly increase the dosage - it sounds like that might be the case with you. I would ask your doc to give you a titration schedule of midodrine: you can up the dose after whatever time he says according to your symptoms.

Yes - that is exactly what I want to tell you. If this forum is working then it will be of help to us - but we are welcome to post our frustrations, anxieties and even anger at our condition. I am sorry you are feeling bad again. I know from my own experience how tightly we will cling to hope when we improve and then how quickly we seem to loose it when we flare back up. I have been there many times and still do - so do many of the members here. The most unsettling fact is that dysautonomia cannot be controlled or predicted, so we constantly are balancing on a high wire. And the fact that the symptoms change over the years is a dollop on top of that!!! - I also have different symptoms at different times. When my HR, BP and syncopal episodes are under control my stomach will act up or the fatigue and brainfog will nag at me. Unfortunately the ANS - as you surely already know - controls (or not!!!) many body systems that we ourselves have no control over. So right now you seem to be in a slow motility phase and I m glad to hear you are getting that gastric emptying study. I know it is frustrating and tiring to keep having to go to so many dr appointment but that is what we need to do to eventually get better. --- A naturopathic provider may or may not be able to help. I have found that in time every flare - and whatever the symptoms - will resolve to a degree. I have been able to get through them with just IV fluids - they seem to calm everything down. Others do best with rest followed by slow reconditioning, some with diet and some with medication changes. Also - I have experienced several times when I flared that there was an underlying deficiendy ( B12, Vit D, ferritin - I have lacked all of them and improved with proper supplementation). -- As you see - there are many ways to survive a flare, and we are all in the same boat. We are here if you need help or advice or room to vent … be strong, be informed and don't loose hope!!!!!

@p8d - I was always told to avoid steroids at all cost due to them mostlikely elevating BP and HR in hyperPOTS. Is that not the case for you?

@RecipeForDisaster - my IV supplies come with tubing that has a rate-regulator built in - a wheel you can adjust to whatever rate you want to run your fluids (it's not a pump). Since I receive my fluids at home I ususally run it at 150 ml/hr, but if I need to run it faster I could adjust it to even 250 ml/hr. Yes - anything faster than over 6 hours is a waste of effort.

This issue really needs to be evaluated by a physician. A DVT normally causes swelling that is not limited to an area but rather causes swelling of a part of the limb, as well as heat and redness. But to make sure you need to have it examined by a medical professional.

@Peter Charlton - when I first became severly symptomatic I went to an autonomic dysfunction center here in US (Vanderbilt) twice. They went over my TTT results which showed NCS, gave me a neuro exam and did autonomic testing and said there was nothing wrong with me (despite numerous monitored episodes of tachycardia, hypertension and syncope). So I went to see another renowned specialist here ( Dr Grubb ) and he spent 2 hours of careful listening and told me I had hyperadrenergic POTS. He then ordered catecholamines on the spot and 2 weeks later was able to confirm my diagnosis. Obviously autonomic testing does not catch all dysautonomia and if the "specialists" are not willing to take ALL test results and the severity of SYMPTOMS into account then they will not be able to diagnose you properly. I agree with catecholamine testing - that confirmed my diagnosis and therefore provided treatment options. P.S. I also have T-wave abnormality which seems unrelated to POTS and is considered harmless.

I second what @RecipeForDisaster recommends - slower infusions show better results. I run mine over 6-8 hours and this is way better than the faster infusions. Also - I have found LR to be more effective than NSS. I seem to retain some of the fluid from Saline but not from LR.

@joiedevivre - congratulations on having a good GP! Mine has been wonderful - without him I do not know where I would be now! He also went out on a limb for mw by ordering IV fluids years ago - and I have continuously proven by way of hospital records that my symptoms and vital signs improve with IV fluids!!! - My autonomic specialist has given me a prescription twice for 1 liter of NSS over 2-3 hours weekly for 1 month. This has always been helpful but has shown not to be enough in an acute flare (for me), but many other patients have benefitted from this protocol. It might be a good idea to start with that and then see how you react to it, as well as monitoring how you do without those fluids afterwards. That is a good way of determining your body's response - but you have to monitor everything, from your symptoms to your vital signs in order to show actual results ( rather than saying you feel so much better ). -- I am so happy your doctor agreed to try this - you have good taste in docs!!! Good luck - I get IV fluids weekly at home through an infusion port and have seen miraculous results. You are welcome to PM me if you have any questions regarding this treatment. Good luck!!!!

I would like to add that POTS, NCS and OH are only the types of dysautonomia that cause orthostatic intolerance. There are several other dysautonomias that do not necessarily have to cause those types of symptoms. Most people on this particular forum deal with orthostatic intolerance symptoms.